Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
Are you prepared for an emergency?
The catastrophic impact of Hurricane Helene is a sobering reminder of the importance of being prepared for disasters and the special care people with disabilities need to take. One handy reference is this Disaster Preparedness Guide for Older Adults. The guide is relevant to anyone with mobility and sensory challenges. The America Association of People…
Mighty micro RNAs
by Yi-Wen Chen, PhD, Children’s National Hospital, Washington DC Many Nobel Prize-winning discoveries have contributed to the advancement of research and treatments for facioscapulohumeral muscular dystrophy (FSHD), and the work recognized in yesterday’s announcement follows in this tradition. The Nobel…
Upcoming Events
Featured
Feeling Fit with FSHD – Breathe, Stretch and Flex
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the October “Feeling Fit” sessions, we will be celebrating the two-year anniversary of the “Feeling Fit with FSHD” program. We appreciate everyone who has joined this group! Frank Hanley will present...
Wellness Hour – Dental health
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Bryan Bowman DDS This month we welcome Drs. Bryan Bowman and Daniel Rexin. Dental health is important for everyone, but people with FSHD may have special challenges. Weak cheek and mouth muscles can affect bite, tooth alignment, and oral health....
Parents’ Roundtable – Open chat
Zoom Virtual Meeting , United States8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month we'll have an open conversation on whatever is on you mind. Many of you may be assessing your child's situation at school or starting college, so that could be a timely subject. Join us for our monthly Parents'...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.